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‘Reflections for our younger selves’

29th March 2021

‘Reflections for our younger selves’

Written by the Mums who attend our Spectrum Support Group, this piece reflects back on support that many wish was in place when they were younger themselves to help them with their own autistic journey.

We are a group of autistic mums who meet for regular discussion group sessions.  Most of us also have an autistic or neurodivergent child or children.   The purpose of the group is to help and support each other as autistic parents, sharing our experiences and the issues that affect us.  Whilst we recognise that everyone experiences their autism differently, we have found some common threads in our daily lives.  Talking, sharing, learning and laughing with each other has been so valuable.   We strongly believe that the more people understand about autism and how it can affect individuals, the better it will be – for other autistic people, families and the wider community.

Picture of a Zoom meeting on a laptop computer screen

A recent discussion topic explored what we would have found helpful as autistic children and teenagers ourselves, and reflecting on that, we talked about what we would like others to know and understand, to help make life better for others and for future generations of autistic or neurodivergent people.

These are our thoughts.  We hope you find them interesting.

We would have liked more information to assist with self-understanding.

Good quality, clear iInformation and specific modelling around friendships would have helped us.  Not to change our behaviour or make us be something we aren’t, but to give information so we could understand and make good choices – for example what makes a healthy friendship? What is an unhealthy friendship or relationship?  We would have benefited from knowing that we were autistic and having more information about communication needs, preferences and styles and that everyone is different.

These are some quotes directly from our group members:

“It would have been helpful to understand what was expected of me. People took advantage of me and I was bullied; it would have been useful to know what a good friend was.”

“I managed to get this social information from the books I read (fantasy and Enid Blyton) and teen magazines. I ended up with a strange hybrid in the way I talked and behaved.”

“I would have benefited from knowing that I was autistic and focussed upon my strengths, my sensory needs, some sort of mentor to signpost.”

I would have liked to know about communication needs and preferences. I didn’t know that others had different styles to me.”

At high school, I thought I was in a popular group but a boy chopped a big chunk out of hair and I realised I wasn’t fitting in.”

“I made a mess of things socially at school and got bullied, or perceived that I was bullied and this lead to moving to another school due to being miserable. I realised that It was prob just me not knowing “how to do friends.”  I gave up on making friends.”

“I have been doing lots of reflection recently and I wish I had had a diagnosis earlier. I was very vulnerable and came across as nice, but taken advantage of. I was too open and honest and would disclose stuff to people who were not trustworthy. I tried to take people at face value but there are so many hidden rules-why can’t people be open and honest?

“It would have been good to be taught not to hate who you are and to look at your strengths.”

Teachers, medical staff, social workers and other professionals need to know everything about autism

We feel that teachers and professionals need to learn more about autism.    Several of us have taken on the role of advocate for our children – and we do this by disclosing how autism impacts on us and on our children in a very open and honest way.   Whilst we clearly feel this is important there is an enormous cost of us doing this – in terms of our energy levels and our privacy – and it takes a lot of time and thought to communicate this information in a way that can be useful. This is usually necessary at a time when things are stressful for us and our child/children and impacts further on us.   We would hope that professionals can learn about autism to help support families like ours so that we don’t need to educate to bring about change and this should not necessarily be our responsibility, in the same way that it should not be expected that other minority groups educate others about issues that affect them (racism for example).   In the absence of sufficient awareness however, we continue to do this to support our children and others who may be having a similar experience.

“Spill everything out – this is how it is being an autistic person – how else is it going to change for our kids – keep blurting it out – this is how it is to exist when your senses are on edge all of the time.”

 “My son had meltdown in school and I explained from an autistic viewpoint to the teacher. “

“We are still learning as parents – no wonder the teachers struggle.”

“Feeling detached/don’t ‘fit-in’ to society on a daily basis is hard work and the education system should recognise how this feels for children and parents and respect this difference.  Support should be given with what can be basic changes, rather than try and change this difference and change the person to what society expects from them.  This is where there is a major clash and misunderstanding”

The group developed a form for reasonable adjustments for autistic parents when in contact with school. To view the form, please click below.

Click to Download

More information around autism in females

Whilst awareness and understanding about autism in females is increasing, this is still misunderstood and missed.   We hope that females will receive the understanding and support that we didn’t.  Most of us were diagnosed very late, typically in our thirties and forties.

“Teachers need to see how girls present differently to boys – why we weren’t picked up. Good to have a greater understanding of girls on spectrum.”

“I would’ve liked people to see past my academic achievements and seen how difficult I found other things as I flew under radar.”

“Teachers need to be aware that she needs help. The way she talks doesn’t match up with everything else.”

Look at all aspects of the child so that challenges do not get overlooked;

Our children are sometimes seen for their “extremes” – either their amazing abilities such as advanced reading and vocabulary, or for their behaviour which confuses or challenges others.  Often, there is a very uneven cognitive profile (spiky profile) which means that others make assumptions that are incorrect.  We hope that people can see the whole child – their strengths and that challenges and that they may excel in some areas but also still need support and understanding in others.

“Reading age and vocabulary are not the only part of her. They experience that in her, and don’t see anything else about her-teachers and family members. In terms of getting support, we need to look at the challenges which may need help. Teachersunderstanding hyperlexia etc.”

Access to an advocate-someone who gets to know the child and can be their voice would be so helpful.  Mentors and advocates for the autistic adults too.

It would be so helpful to have someone in place to support the child on an ongoing basis.  SEN resources are stretched and an advocate who developed close understanding and holistic awareness of the child could make such a difference.    Some of the challenges we experienced when young are still affecting us as adults, and advocates and mentors could make such a difference to our lives. Specialist mentors for autistic students are in place at university – what about support before that to help children that may otherwise miss many opportunities and don’t make it to university?

“Healthy support not toxic support – advocates, mentors, right support.”

Reasonable adjustments and more information around these.  These could be offered rather than having to battle for them.

Reasonable adjustments are something that can often be provided very simply and can make such a difference to autistic people’s lives.    Whilst some autistic people may have some very specific requirements, other adjustments could be common and very simple to implement.   It would be helpful if these could be offered as general good practice – simple things like including images and detailed information on travel to venues, images of locations, reception areas and staff for example can make such a difference and can help EVERYONE, not just autistic people.      Some of our children have been made to feel shame for using equipment or sensory aids that they have permission for that other staff haven’t been made aware of – or have even had these aids taken away.  This is unacceptable and can be avoided with good staff communication and awareness.

“X went into school and had confidence to wear his noise cancelling headphones. He wore them once a year ago and people talked about him.   I’m proud of him; he stood up to it, he needed them to block out noise.  Then his teacher told him to take headphones off.”

“Y was called out during assembly for having a fiddle toy-he was mortified.”

“Adjustments at school such as exam accommodations would have helped as exams were very stressful.”

“Adjustments for sensory differences.”

“I feel that I could have done better academically with tweaks.”

“Guilt around asking for help from disability support at university. There’s a whole lot of mental health stuff aroundthat. It was done professionally, so I felt empowered, I accepted it and it works so well.

A full sensory profile and suggestions for help-to be properly assessed and strategies provided.

Many of us and our child/children have sensory needs that impact on every single day.  Although we know ourselves and our profiles fairly well and have put things in place to help us manage – what about those who don’t have that awareness or understanding?   We think every autistic person should have a full sensory assessment and receive advice and strategies based on the outcome of that.   We also believe that it is important that others understand how much sensory issues can affect us.

“Difficulties because of sensory issues are probably the biggest single issue in our household – and we are each impacted differently, which compounds the effect. I didn’t know I experienced these things differently than non-autistic people – how do you know what someone is experiencing inside? – and assumed I was just terrible at coping with things”

Some useful videos around this can be found at the following links:

What it’s Like Being Autistic (Sensory Overload ) Short Film – Bing video

 Sensory Overload – Bing video

Acceptance and understanding – and practical help with the things we find challenging

The more people understand about autism, the more straightforward things will become, and the easier it will be for us to accept help with things we may find difficult.

At work you often work in an area where you have strengths and skills, and a good manager will allocate resource to work with this – a good team has a mix of skills and strengths to balance each other.  As autistic adults,  we often spend a disproportionate amount of  time and energy on problems and things that someone else may be able to do very quickly (form filling for example)   This means we sometimes don’t get to the things where we can shine and flourish.

“I loved music, took a piano exam at 9, played the flute and went to a Saturday school. I used to feel so anxious about attending that I was nearly sick. This could have been anxiety around change maybe? As soon as I was playing my music I was fine; I was in my safe zone. With a diagnosis, maybe I could have had support instead of going through pain and unnecessary stress.”

“At home, family possibly wouldn’t have put so much pressure on me to be academic if I had my diagnosis back then and given me more choice”

I would have liked people to understand that me having my head stuck in a book was a good thing; the books were safe space. Instead, I had negative comments from family members about it. Reliving the books from my childhood with the kids one of the best things.”

“I felt every single criticism deeply and I held on to it for years, really took the negative comments to heart.”

I ended up in a controlling relationship as I mixed with the wrong people; I was used to people doing things for me. I need to be empowered; needed help to understand and manage myself with the right tools.”

General understanding in society of difference will make life better. If people understand, things will become easier.

Allow for different learning styles.

Believe us.

Give us time – to reflect, to listen, to process, to transition

More investment in public services is key to provide appropriate support individuals and families

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